About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, November 17, 2012

Hey Y'all! How are you? I want so much for everyone to know about the avm world and what part all of you play in it - so that is what this blog entry is about! I'll try and keep it simple, ok? This avm is hard enough for me to understand and I'm living it - I can't expect you to "get it", although many of you really do! Mark lives it every day with me and I know my sister Celia really gets it too! As you know, "bleeds" can result in what looks like a CSI crime scene sometimes. Keep in mind that other avm patients may be having a different experience depending on the severity of their avm.

I was @ Wal-Greens the other day, filling a prescription, when a boy of about 9 years old came around the corner, saw me and went, "Eewwww"!!!!! I could tell he thought my appearance was maybe a Halloween thing. I heard his mom call out his name and I told him it was not polite to stare! This isn't the first time I've experienced this - several years ago, another kid @ a Halloween carnival looked @ me and I could tell he thought my face was not what I really looked like everyday - he thought it was part of my "costume". Mark and I ran into one of my lovely co-workers, Griselda several weeks ago @ Petsmart and she was with her son, about the same age as the two boys I had just told you about. Her son never flinched, hid behind his mom or stared - very well mannered and excited to tell us about a school project he was working on! Kuddos to parents that are raising well adjusted kids! You should see Griselda too - she would have every reason to be vain - has long straight hair, very pretty and dresses well - she is the classic example of beauty is as beauty does - she is very down to earth and is always willing to listen and to help in any way she can! Sadly, I've had adults blurt out, "what happened to your face"?! Yikes! I'd never ask someone, "hey, how'd you get stuck in the wheelchair, or how'd you lose the limb"? I don't want people feeling sorry for me either - just treat avm-ers as you would anyone else! I've been impressed every morning as I get to the front door @ work @ the Nueces County Probation Office, that one of the defendants in the lobby stands up to hold the door open for me as I pull along my "what if" bag as Mark calls it. It's a cart full of anything that will make me more comfortable while I'm @ work. From meds, to snacks and books, magazines, etc.
I've had discussions with some cancer survivors (co-workers) that truly are grateful and appreciative of their lives - puts things in perspective and they have a very positive outlook after what they've been through! On the flip side, I am shocked to know someone having suffered a medical setback and appear not to have learned from their experience! Same arrogance, false appearances and superficiality. Wow. Guess we all handle things differently.

As many bleeds as I've had, you'd think I'd get a handle on it. Seems to throw me off physically, psychologically for a few days. Takes a while for me to process the experience before being able to relax a bit. I can't help but feel sad and upset several days after a bleed. Can't help but feel like there is impending doom - just waiting for the next bleed. I'm afraid to go anywhere, I want to stay home where I have what I need to try and stop the bleed. I worry about what I can eat - although a bleed can happen @ any time whether I'm eating or not. I can't eat just anything either, due to some dental problems - it's easier for me to have something fairly soft and not something really crunchy or hard to chew. I want this overwith already!!!!
Mark is so great @ soaking my clothes and getting all the blood off of them. I never can get them as clean as he does! Celia has insisted my embolizations be no more than 5 weeks apart, as this is the only way this nightmare will be over - is to keep after it until we beat this!

I give so much credit to our maternal grandparents that set a foundation for our family of faith, love and prayer - otherwise I would not be able to deal with this hardship. Family and friends I appreciate your prayer and love! My Primary Care Physician, Dr. G. Boynton - I sure keep him busy as I've needed many blood transfusions. A doctor can go his whole practice and not see anyone like me w/an avm. Wound care techs, patient coordinators and nurses - you are awesome and so appreciated by me! Keep up your fantastic outlook - you are in the right line of work! If you are out there with an avm - you need to see Dr. Yakes! He has a fantastic bedside manner and knows how to help you! All Dr. Yakes P.A.'s, Kelly, Mandi and Andie are always so caring and professional! Putting the patient first and always there for us! I started with P.A. Dave, Rhonda and Eric and nurse Julie Labadie - all so fabulous!!!

Thank you Lord for surrounding me with the angels that help me get through each day and for giving me the strength to handle what I wish you wouldn't trust me so much with! I love my life with Mark and our two furry kids Hanz and Bella! They love me unconditionally and keep my spirits up! I need to deal with knowing that spontaneous bleeds will be inevitable until there is no trace of the avm left! I'll do my best not to whine about it and throw myself into the things I love most that make me happy! Love reading, Twilight, the #1 comedy The Big Bang Theory, country music and hearing from friends! Thank you! My co-workers go above and beyond always offering their help and treat me so well - especially my friend Diana - she's brave enough to venture out to have lunch with me knowing I could have a bleed (and have) while I'm out w/her!

Our families help us get to Denver and to maintain our home! Their generosity is enormous and they help us function in a somewhat normal manner! From helping us move out of storage rooms to fixing a broken window. Celia has come over with her cleaning lady and dusted, cleaned out our fridge and swept and cleaned the kitchen! My angel of a brother-in-law Greg (DDS) will get me back on track, along with my nephew Mark that makes beautiful porcelain crowns/teeth that I'll need replaced eventually! As I've mentioned before, Celia is a dental hygenist and does her best to maintain my teeth for now! Because of the avm, I'm limited to how wide I can open my mouth, so It's hard to get in there to brush and I worry about my breath and my teeth rotting! UGH!
I want to mention my brother-in-law Jim and his wife Shelley again - they support us during this time and help Mark keep his spirits up too! Jim comes into town often from Rockport and takes Mark out for lunch and keeps in touch often over the phone! My in-laws Doris and George and other family members keep me in their prayers and this helps so much!
I've had a trache for a couple of years now so that I can be intubated for my procedures and I'll have that until the avm is completely gone. Unfortunately I have some partial paralysis on the left side of my face. Hopefully there won't be any more before this is all over!

I'm always being asked whether Dr. Yakes is really helping me and are these treatments really working? Celia found Dr. Yakes on the internet and I would be bleeding out of control without his help! Since my avm is facial, it is extremely complicated and time consuming! Patients with an avm on their arm or leg can have 2 treatments each visit to Swedish, but I can only have one. Healing varies as well - some patients experience swelling, some cracking skin, etc. My stubborn pseudomonous infection took months to recover from - which meant being on an IV antibiotic several times a day for a couple of months and that just zapped my strength! My family almost literally had to carry me to my doctor appts. and wound care during that time!

I miss being the kind of friend I like to be, that sends gifts and cards and shows her friends how much she cares. I miss you Dorinda, Felice, Patty and Sylvia! I just can't function like I used to right now, but I have hope that my life will return to normal in a few years! I miss being a woman in love that enjoyed Mark-a-ritas and wish I could roll on the grass with Hanz and Bella! I miss my hobbies of rubber stamping, calligraphy and cross stitching - I just don't feel up to doing much of anything. Don't know whether my left ear hearing loss is permanent and for now I sleep in a hospital bed so I can be propped up to help the facial swelling and every night I sleep with a humidifier on my trache. I also sleep with a "bed wetting alarm" that I pin on my nightshirt in case I have a bleed during the night - the alarm will vibrate and make a loud noise to wake me up!

I know all of this will be over one day. I just wanted all of you to know that it is a huge team effort that allows me to be able to function! Team Cyndi! Thank you for helping me get through this and being part of Team Cyndi!
I welcome your questions or comments any time!
Love
Cyndi

P.S. By the way, Celia and I are Team Edward. Haven't seen the new Twilight movie yet - too many people out and I don't need to be having a bleed in the middle of it all! I'll probably wait a week or so and see it w/my sister Celia and my husband Mark! He is such a great sport about my Twilight obsession! We rarely take in a movie - we'll venture out to see The Hobbit as well, but that'll be it for this year! I'll try and come back and put some photos in here, ok?

Sunday, November 4, 2012

Hi again!

How are you? Celia and I just got back last night from another trip to CO! We learn something new each time we go for me to have a treatment. I had some questions and was not necessarily happy w/the answers. I wondered if other avm patients Dr. Yakes has, have as much trouble w/bleeding as I do. Yes. I also had wondered and hoped that the closer I would get to finishing treatments (embolizations) that maybe I would be less likely to have a spontaneous bleed. The answer was, as long as there is a trace of avm, then there is a chance of a bleed. So, from now on until this avm is completely gone, I can have a spontaneous bleed - ugh! I can't help but think about whether this will really all be over one day. The answer I got was one I pretty much knew the answer to - after Dr. Yakes declares the avm is taken care of, he'll have the patient come back w/in 6 months to have an MRI done, to make sure he didn't miss an area, or that there has been any regrowth. If there is, then there will be more embolization done (usually very mininmal) and then another 6 month wait and another MRI done to see if all is clear. I'm thinking once a year has gone by, then the reconstructive surgery begins. I hope not to have any more facial paralysis or chipped teeth or losing crowns! As time goes on, I can wait a year and then longer to have the avm checked out and we make sure it won't come back!
Some of my favorite nurses - Jill, Judi and Laura came to say a special hello, as did Jason and of course Alex (a/k/a "Jacob Black") was on duty, so I enjoyed talking to him! Burgess must have been off, because I didn't see her, and Saba has gone to nursing school from what I understand, so I don't get to see her as a tech to come in and take my vital signs anymore! Each night I was there, Jack was my nurse and he came in the room one time to find me nearly tipped off the bed to the right! He made sure an extra hand rail went up so I wouldn't fall off the bed! I always enjoy talking to Victoria - she is in housekeeping and is from Africa! Always in a good mood and assures me I will recover completely as she has seen many patients do so! She keeps me in her prayers and that is very much appreciated!
The day before being released from the hospital, one of the nurses came by to ask if she could have my blog address to give to another Dr. Yakes patients that was in a room down the hall! Of course - always nice to hear from a fellow avm-er! I went down to the nurses station later and asked about the patient, hoping to meet her, but she had company @ the moment. We left the following day, so I never did get to meet this patient! I will always be grateful for all Shalon has done for me regarding having an avm and relating to someone pretty much in the same situation!
The weather was decent - no snow during the time we were there! I think Celia said the lowest it got might have been in the 50's. I was pretty much stuck indoors @ Swedish the entire trip! We did get a chance to hit Wally World, so Celia treated me to some cute jammies and a nice jacket! Got a t-shirt from the space store @ the Houston Airport as well! We enjoy talking books - her with her I-pad and me with my Nook! These trips help us catch up - we're all so busy during the week but we always do make time to touch base w/one another @ least once a day by texting or calling each other!
All in all it turned out to be a pleasant enough trip. I tell everyone @ Swedish that I tell people here how much they make their patients feel well cared for! Had fun talking to one of Dr. Yakes fairly new patient coordinators - JoAnn! She's got us hooked on drinking some Chi Tea from the coffee shop downstairs! I believe Becky is the other patient coordiator and she was telling us what she likes ordering @ Starbucks, so we got some good tips! Andie was the P.A. we dealt with most this trip - did see Mandi as well, but didn't get a chance to see Kelly!
For the most part, I have been able to deal with having to go through this medical crisis, and sometimes I even forget about it until someone stares, I feel rotten or I have a bleed! I know there is no way Mark and I could get through this without our faith, love, prayer and support of our families! It's great to be home after Mark had been gone 4 days to OH. Then I was in the hospital a couple of days here, then Celia and I left for Denver! Hanz and Bella are probably wondering what's going on w/their folks coming and going all the time! I know when Mark was gone, they missed him terribly!

My sister Celia and husband Greg go above and beyond in helping us through this difficult time! From expenses to emotional support and lots of prayer! Marks brother Jim and his wife Shelley in Rockport give us so much support as well! They are both there for us if we need anything and never hesitate to let us know how much they care! If I didn't have all that, I would be a lot worse off! My darling husband is amazing - he often has to clean the bloody mess my avm bleeds leave behind since I can't bend down to do it myself! Mark knows exactly how to make my favorite comfort food, so even if I can't always eat what I want, @ least what I do get to eat is delicious! Mark puts in a full day of work - (sometimes working out in the hot, humid, Texas heat and that can really drain you)! He'll rest a bit and then make sure I'm well taken care of. Makes our dinner, takes care of the dogs if they need bathing, grooming, feeding - plus he picks up the chores I can no longer do depending on how I'm feeling! All I really do around here is the wash and that's not much, but all I can handle @ the moment!
Here are some photos of our trip - Fall in Denver, leaves changing colors, something we don't see down here! Being transported to OR talking to Mark and then waiting in OR to be set up for procedure. The bulletin board on the 7th floor feature my peeps that take care of me while I'm thier patient! Then of course, that's me in front of the hospital sign - my home away from home!
So onward we go ... hoping and praying for mininmal bleeds until all of this is behind me one day! Thank you for coming on this journey with me! Every single one of you matter and are a part of my recovery from what we are going through right now!

Mom always slips us some money to help w/expenses on these trips and I know she does a lot of praying! Her husband Vicente just celebrated 81 years @ the end of October and he is extremely supportive of what we're going through and makes sure mom is there for me!